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Which well known doctor/best for what? Spinoff from last post...


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Me again :)

 

From personal experience, could people please advise me of what they think each well known doctor is best at. For instance, like so and so is known best for ruling out this and so and so is known best for investigating any and all triggers, which doctor will fax orders from afar after you have personally seen them, which doctor seems to be most up to date on treatments, who is hard to get into, etc. At this point, I am not interested in treating PANDAS so to speak but interested in being convinced if it IS IN FACT PANDAS and/or ruling out anything else. I would like an explanation on copper issues and if they have some connection to autoimmune disease. I would like someone who is willing to order the Cunninham Panel and if that is negative guide me on where I need to go for the abnormal mineral levels.

 

At this point, I am willing to travel wherever. We have literally thrown thousands of dollars away locally and at "the greatest" Vanderbilt in Nashville. That was actually my worst experience. I almost feel like I have paid dozens of doctors to treat me like I am ignorant or have Munchhausen (sp) syndrome. I have even had a pedi ask me if I "wanted something to be wrong". Well, of course not...I want someone who can use their medical degree and tell me what is wrong with my child instead of trying to tell me he has always had OCD and tics I just never noticed it. I know it will be costly, but at this point we will do whatever it takes as most parents feel at some point. I think just going to the best will actually save money even if it means spending traveling/staying costs a few trips, and I need an idea of which doctor does what to give me an idea.


Thanks again so much

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You could get a different recommendation from every person who is on this board, but here is mine. Go to an immunologist that "believes in" the diagnosis of PANDAS. They will test for numerous conditions both related to PANDAS, and those unrelated. If you find other co-infections such as lyme etc, you can then go to an LLMD as well. We are going to have to add a nephrologist to our team of docs, but I am hoping the Immunologist can treat the major symptoms we see with kiddo. We are seeing Dr. Rao in Texas, but we have only had one appt, so I am not sure how great he is, but many people recommended him to us prior to our going to see him. He is now listed as a PANDAS specialist as well. He has not made a plan to treat yet since we were waiting on lab results.

 

You can call a doc and ask them their approach to handling a case involving PANDAS instead of jumping from office visit to visit. This will give you valuable information prior to the appt. that may save you valuable time and money. There is a website that I lost the addy too, but it has a list of docs. I will find it and post a link here.

 

Here is the link for finding a doc on board with PANDAS: http://pandasnetwork.org/resources-new-research/providers/

 

No matter the doc you go to, if you do not already, start a log that lists ALL symptoms and what seems to make them better or worse. I started a medical log that looks like a doctor's chart so it is easy to read and takes up little space. They are more likely to read this than a paragraph as well. Get a copy of all tests run, and keep them for later reference.

 

Here is a bit of the log I started for kiddo in case you are interested:

 

03/18/13 Mom SX low grade fever, vocal tic and emotional liability slow regression

TX Zithromax 250 mg ½ QAM—Keflex 500mg PM QOD

 

03/29/13 Mom TX DC Cherry/OLE. Add BCM-95 200mg and titrate up slowly

 

04/01/13 Mom SX Woke with 100 deg Temp, vocal tic, feeling poorly

DX Die off/herxing?

TX Add Charcol between other meds, APAP if needed

 

04/04/13 Immu SX First Appt to persue improvements

DX Autism, PANS

TX Blood work, Urine tests, continue ABX as is until results

Edited by Mayzoo
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We have been very happy with Nancy O'Hara - she is an integrative MD/DAN doctor. (autism is not in the picture for us) Though we do use a team I have really come to rely on her more and more. I like that she has the traditional MD/pediatric background combined with the holistic aspect. She can definitely guide you on everything you mentioned along with traditional treatment. I find her to be very smart and thorough, knowing the ins and outs of supplements very well. Things are not perfect but DD has come very far with her. Her asthma has even improved which was not at all a focus. She is also good about trying to save on tests etc where required.

 

DD has had some fairly thorough immune and infectious disease workups, but it sounds like you have already had this.

Hope this helps, I know its very frustrating. Feel free to PM for more details.

 

Her website is ihealthnow.org but the website is down right now, I was trying to paste the link but its not working.

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Here's my own experiences for doctors we've seen and my impressions from others regarding doctors we've not seen.

 

Dr K is a pediatrician who knows Pandas well and will be very helpful to those who are dealing with strep only. He is fairly conservative in his use of antibiotics in that he believes you give abx (antibiotics) for a certain period of time (few months?) and a short prednisone burst (5 days) to see if there's clinical evidence you respond to things that fight infection and inflammation. If you still have symptoms after a few months, he's inclined to pursue IVIG but feels you should only do it once, maybe a second time 6-12 months later if you need it. I don't believe he feels Lyme is an issue and will not test for it or treat it. (from what I understand).

 

Dr L is a neurologist who knows Pandas well, will treat with long term abx if warranted, will pursue Pex or IVIG if she feels it could help (done at hospital) but does not advocate for multiple treatments or if multiple, that you give a length of time in between, much like Dr K believes. She does recognize other infections can be triggers but does not treat lyme. I respect her a lot, she will give you her complete attention and will not rush you through an appt. but she is impossible to reach once you leave her office and requires a lot of energy/follow up on your part.

 

Dr B is an immunologist and a Pandas specialist who I believe will treat with either long term abx or IVIG. But he believes IVIG should be given repeatedly every 8 weeks. He does recognize lyme and co-infections are a big factor for some kids and he will test for/treat less complicated cases. He refers more complicated cases to an LLMD. He accepts insurance but because of that, his practice has grown considerably and you may see an assistant (nurse practitioner?) once you're an established patient. IVIG infusions are done in his office. Because he accepts insurance, his visits are more brief than some other doctors. From his current patients, I understand it can be difficult to speak with him outside of an office visit - you can use email but access can be frustrating and require some effort on your part.

 

Dr T is a neurologist and Pandas specialist who will also test for/treat mycoplamsa but I believe he relies on standard lyme testing, which is not reliable IMO. I do not believe he has rights at a hospital to do IVIG but maybe his current patients can clarify how IVIG works through him. I believe he is in the camp that feels only 1 IVIG is generally sufficient. He does support long term abx use. He can be very difficult to reach for followup questions. He has recently been exploring genetic testing but I don't know if that has altered his treatment protocols.

 

Dr O - is an MD autism specialist (DAN doctor) who also understands/treats Pandas but with abx. I don't believe she uses IVIG. She, more than the others, will make supporting the gut and the body's systems (e.g. methylation) a primary part of treatment, along with abx. She recognizes lyme as a possible issue but it isn't her specialty and if lyme is one of your infections, you may need a second doctor on the team.

 

LLMDs - Lyme Literate MDs - as a group, they believe in long term abx, often using more than 1 abx at a time, to treat stealth infections. They, in general, will consider/treat things like mold, fungal/yeast infections, parasites, lyme co-infections like bartonella and babesia, believe in diet changes and the use of supplements and herbs as a secondary (or maybe primary) method of treatment. They can get a little "out there" with their ideas and approaches but they see this as a long haul journey and sometimes have ideas that conventional docs might scoff at but have been exactly the thing certain kids have needed. Like Dr O, they tend to look at the whole body as a system and will emphasize diet and environmental aspects along with things like abx.

 

I believe all of the Pandas docs support/will order the Cunningham labs. Some LLMDs may.

Dr O and the LLMDs are most likely to look at metals, copper, methylation issues. Dr T may as well but I have sometimes questioned his approach on this topic. Doesn't make me right. Just giving my opinion.

 

I have yet to find any single doctor who can meet all my needs - no Prince Charming. Some of us use more than one doctor on the team for that very reason. Generally, no one is going to explore all of these issues. But some may be more willing to order tests on your behalf and support you as you try to connect dots yourself. No one is going to drive the bus though, except you. You are going to have to do a lot of research on your own.

 

With lyme in the picture, I've had the best luck with our LLMD. He's been able to do the most for my kids. We thing lyme may be out of the picture now but he'll continue to be my son's Pandas doctor for as many years as we need support. If I had funds left, I'd probably add Dr O as our second doctor. Others here will have different opinions. Some absolutely love one doctor or another. it's like dating - find the right match and life is good. But since you're looking for someone who will cast a wider net beyond pandas, it sounds like you might be best served by an LLMD (good ones can be found between DC and CT) or Dr O.

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We see Dr.T:

He will order any test and will prob go in any direction you agree is wise. He does phone consults so you may be able to reach him before lugging up to NJ. He does IVIG through Walgreens infusion that will come to your house (contract with nurses). We found this was a great for since DS15 isn't leaving the house at all : (

 

LLM is correct, that he can be hard to reach, but he will order most any test and email a script. Also will do multiple IVIGs, believes in abx long term and PEX.

 

But we have had occasions where we waited days to hear back on labs.

 

I've heard great things about Tanya Murphy at USF.

 

T.Anna

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Dr. M is great for getting a diagnosis, but her treatment plans are very conservative. She is primarily a researcher, and has published boatloads on PANDAS. She's currently involved in a couple of abx trials for treating PANDAS. As such, she has to be careful how she treats patients. For example, my son is classic strep trigger PANDAS. He responded well to abx, but we could never get to 100% b/c he was constantly getting re-infected. She thought IVIG might help him, but b/c he presented with NO immune deficiencies (healthy as a horse...on paper), she was reluctant to order it b/c it isn't in line with her research. I understand that might jeapordize her funding. But she has several fellows on staff, most are pretty good, and they are pretty responsive to emails. She is local for us, so she was our obvious first choice, and she also took our insurance. We see doctors over at Rothman for CBT therapy - and have had great success with that too, and the therapists we work with all understand PANDAS from working with Dr. M.

 

We also see Dr. B, he did Lyme testing through Igenix multiple times for us (all negative) and we recently did IVIG with my son up there with great sucess. We found that when we flew up for our first appointment, he was running a bit late (about a half hour or so), but when he saw us he was very thorough and took his time with us. The follow ups have all been via phone, and are not covered by ins. Those, I feel, are more rushed, and I'm often reminding him of specifics of my son's case, which I'm not a fan of. The last phone consult, however, we did with the PA. She was wonderful, I didn't feel rushed, and I felt like she was prepared and had read my sons file prior to the call.

 

We are fortunate to have an amazing pediatrician who is very PANDAS friendly and gets us in for strep checks and gives us abx as needed to manage flares/symptoms. He was just not comfortable pursuing IVIG for us. But now that he has seen how my son responded to it, and has copies of the medical records, we may do IVIG locally in the future - for now, we are doing it up at Dr. B's - he also got it covered through our insurance, which helps offset the travel for us.

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It was clear to me after several months post acute onset that I needed to put together a multidisciplinary team. Each specialist brings something different to the table and they are all valuable to me. Recovery from PANDAS/PANS is no small task and is not inexpensive. Our primary doc for immunology is Dr. B and our primary doc for IVig (only had it once, with great success) is Dr. L. We see Dr. E at Dupont (formerly of CHOP) for our checks and balances at this point. We have another immunolgist as back up, but we have not seen her for a year as she has been between practices.

 

I direct the avenue that treatment takes based upon research, valuable feedback and anecdotal evidence from other parents, lab results and opinions/ideas from our primary specialists. I have found myself in this position for the reasons cited above. No one doc has all of the answers. Of course, finances and geographic location come into play as well as many other factors. I do belive that Dr. L and Dr. B both consider Lyme, Bart and other tick borne infections. However, as is appropriate, if the infections are significant, they refer out to an LLMD.

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Airial --

 

Tried to send you a PM, but it said your box was full.

 

Dr. M is great for getting a diagnosis, but her treatment plans are very conservative. She is primarily a researcher, and has published boatloads on PANDAS. She's currently involved in a couple of abx trials for treating PANDAS. As such, she has to be careful how she treats patients. For example, my son is classic strep trigger PANDAS. He responded well to abx, but we could never get to 100% b/c he was constantly getting re-infected. She thought IVIG might help him, but b/c he presented with NO immune deficiencies (healthy as a horse...on paper), she was reluctant to order it b/c it isn't in line with her research. I understand that might jeapordize her funding. But she has several fellows on staff, most are pretty good, and they are pretty responsive to emails. She is local for us, so she was our obvious first choice, and she also took our insurance. We see doctors over at Rothman for CBT therapy - and have had great success with that too, and the therapists we work with all understand PANDAS from working with Dr. M.

 

We also see Dr. B, he did Lyme testing through Igenix multiple times for us (all negative) and we recently did IVIG with my son up there with great sucess. We found that when we flew up for our first appointment, he was running a bit late (about a half hour or so), but when he saw us he was very thorough and took his time with us. The follow ups have all been via phone, and are not covered by ins. Those, I feel, are more rushed, and I'm often reminding him of specifics of my son's case, which I'm not a fan of. The last phone consult, however, we did with the PA. She was wonderful, I didn't feel rushed, and I felt like she was prepared and had read my sons file prior to the call.

 

We are fortunate to have an amazing pediatrician who is very PANDAS friendly and gets us in for strep checks and gives us abx as needed to manage flares/symptoms. He was just not comfortable pursuing IVIG for us. But now that he has seen how my son responded to it, and has copies of the medical records, we may do IVIG locally in the future - for now, we are doing it up at Dr. B's - he also got it covered through our insurance, which helps offset the travel for us.

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If I can sum what previous posts are suggesting: you are your kids best dr or, rather, you should teach yourself to become your kid's doctor. And then when you do that, you can set realistic goals and choose real drs that can get you there.

There are prudent ways to proceed like check for co-infections, monitor myco (if that is what your kid has), see what other autoimmune ailments you have in your family, check for food and environmental sensitives, and so on.

Put another way, I don't see any one dr out there yet for PANDAS/PANS

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I am a fellow frustrated Vanderbilt parent. I wish I could have spared you that time and energy. We live in the Nashville area and have 3 PANS children. There is no one in this area who will be able to help you. There are a couple of practitioners who are listed as LLMD's or PANS physicians but I can tell you they are no where near "true speciality", that you will get by traveling. We have seen Dr. M in Florida several times and Arial95 is correct she is conservative but I will say she did get us IVIG for my daughter. She only wrote the recommendation letter. We ended up doing it locally through one of the integrative practitioners we use in Nashville. The Nashville Practitioner is good and understands PANS somewhat but I still have to be the guide on most things. She doesn't treat Lyme and didn't even want to test my daughter for lyme. I had to insist on it and then I had to find an LLMD out of state to treat my daughter. But she was helpful with getting the IVIG done and she has helped with some other PANS related issues when we couldn't get out of state.

 

I have been my kids medical director. I decide which physician they need to see and when. If I think they need testing, we make a trip to Florida and see Dr. M. She is great for testing and digging for the problem. When I knew we needed serious treatment, I found an LLMD. When I thought the kids needed a little something more we headed south again to USF for their wonderful CBT / ERP program. It was a life saver. Again, I also have a local practitioner who is PANS literate that supports our treatment and knows we use specialist out of state. She is willing to learn but I think she realizes she isn't on the same level as the others yet. Even though she didn't believe in the whole lyme testing thing she has been supportive since we got the results and started treatment. We haven't had to use her in quite a while though. Lastly is our pediatrician, she recognizes that the kids have PANS, knows we use specialists out of state and is available for the routine things. She is a believer, but by no means knows how to treat. Anytime we go to see Dr. M or any other specialist we ask them to send our Ped a letter explaining the treatment plan. I feel it is the respectful thing to do and keeps her in the loop.

 

I have heard really good things about Dr. Rao in Texas. That might be a good place to start with your testing. Then you can see what you are dealing with. If you end up with lyme or myco or both you may want to consider an LLMD closer to home. Dr. B may also be a good place to start with testing. Again, if you end up with lyme or myco, I would absolutely switch to an LLMD. If you have any questions, feel free to pm me.

 

Dedee

Edited by Dedee
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One more note re/ Dr.T: we just did genetic testing via him, found a few abnormal genes we're flupping on, DH & I now waiting for our DNA results to overlay. But, during debrief on labs Dr. T said 'well, he has the PANDAS gene'.

Like you we have struggled so long to make sense of DS issues, it was a bit validating to hear.

 

Dr.T read Ds's IgenX Lyme tests and deferred to thier 'negative' findings, but also said he couldn't really say definitively due to the IND and ++ bands present...And that's not his forte', so working with LLND to rule out any bug stuff.

 

So, the Courtagen DNA testing might be one validation you can try, and we only do phone consults w/him as we live in WA.

 

Like the others we have a PANDAS specialist ped, a LLND, psychologist, another counselor and Dr T working on DS. I would add immunologist, but only ones in WA are @ SCH, so thats out.

 

We most likely we will add more until we can get him back to healthy. I feel for you. Good luck.

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What is the "Pandas gene"????

 

I was going to ask this as well, but the answer may be in this link:

 

http://www.ncbi.nlm.nih.gov/sites/ga?disorder=PANDAS

 

I have not read the whole thing or found the answer yet, but which ever of us finds it first, we can post back here :D.

 

Ehh, nevermind. I did not find the answer there, but feel free to see if I missed it.

Edited by Mayzoo
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